East Grinstead woman battling rare stomach condition "infuriated" by lack of awareness
Jessie Sharp is urging for more awareness around chronic illness, after multiple misdiagnoses and being forced to go private for treatment
An East Grinstead woman forced to rely on a feeding tube as she battles a rare stomach paralysis says the lack of awareness is "infuriating".
29-year-old Jessie Sharp is calling for more research into chronic illnesses after she was diagnosed with gastroparesis almost three years ago.
The condition, which means the stomach muscles don't contract to digest food as they should, affects 14 in every 100,000 people, according to charity Guts UK .
Private help "the only way"
Jessie told Greatest Hits Radio that the pathway to diagnosis was "infuriating":
"You go and see somebody, and you get told 'its your anxiety', 'its in your head', 'its an eating disorder'.
"You want to scream, you want to shout, you want to cry.
"When you finally get it, it's a bittersweet moment - you think, 'I'm not going mental'."
But Jessie's fight struggle didn't end there - she said she was forced to turn to private healthcare due to the severity of her condition: "You're at rock bottom, and you're feeling absolutely horrendous, and they say 'we don't know what to do with you'.
"You try to get referred to places, they reject you, and then you're just in a cycle.
"Your doctors don't help, the hospital doesn't help, and the only way to get help is privately."
Others aren't alone
Since, she's launched a fundraiser for alternative treatment in America, in which she writes is "the only clinic in the world offering this specific neurological recovery programme."
"It basically re-balances your whole body naturally, with oxygen therapy, scar tissue therapy, and massages - holistically."
Jessie's mum, Mandy, added: "We're really hoping and positive that it'll help Jessie.
"But it isn't available privately or on the NHS here, or anywhere else - that's why it's so expensive.
"It is frustrating, and upsetting, but I look at Jessie and I think we're on a positive roll now, we've done so well."
Jessie has also amassed thousands of followers sharing her story on TikTok and Instagram
"I want to try and help others in my position who are fighting this as well, to help us regain awareness, quality of life and to let them know they're not alone."